Michigan Birth Defects Registry Presented by: Mary Kleyn, MS October 23, 2008

Public Health Importance 1 in 33 babies is born with a birth defect 1 120,000 babies are born with a birth defect in the United States every year 1 Associated with adverse outcomes Infant mortality 2 Childhood mortality 3 Long-term disability 4

Michigan Birth Defects Program Components Michigan Birth Defects Follow-up Program Genomics Section, Division of Genomics, Perinatal Health and Chronic Disease Epidemiology Michigan Birth Defects Registry (MBDR) Vital Records and Health Data Development Section, Division for Vital Records and Health Statistics

MBDR Statewide reporting began in 1992 Passive reporting Available data birth cohorts Infant and maternal identifiers Diagnosis and procedure codes

Collection-Reporting Sources Hospital/Lab Report Death Record Birth Record Birth Defect Case Supplemental Sources: NBS FIMR EHDI CSHCS Pediatric Genetic Clinics

Collection-Submission Types Paper abstract Electronic Electronic Birth Certificate (EBC) Birth/Death records

Current Status Almost 400,000 reports have been processed 32,000 reports processed annually 12,000 new cases annually

MBDR Data (2003) Overall prevalence of birth defects: 768.6/10,000 Diagnostic GroupPercentage Heart and Circulatory System22% Musculoskeletal System21% Genitourinary System18% Respiratory System7% Digestive System6% Central Nervous System5% Eye4% Integument3% Chromosomal Anomaly3% Orofacial Clefts2% Ear/Face/Neck2% Other/Unspecified7%

Current Use 2006 Annual Report 5 The Michigan Monitor 6 NTD Follow-up Program Articles 7,3 Presentations/Posters 5

Future Use Proposed study Neonatal Intensive Care Unit Length of Stay and Accuracy of Diagnosis of Birth Defects, Michigan, Develop and disseminate “profile sheets” on birth defects Map rates and perform cluster analyses of select birth defects over time

External Use Wayne State University Metabolic newborn screening for congenital heart defect Tandem mass spectrometry of newborn birth defects University of Michigan Spatial analysis of congenital anomalies reported to the MBDR from Mortality trends in children with hypoplastic left heart CDC Leading major birth defects among births to women of Arab ancestry living in Michigan,

Strengths Centralized reporting to MDCH Facilities have several reporting methods Population-based Externally funded

Limitations No data exchange between states Implications: This may cause an undercount of the actual number of cases and may significantly affect the completeness of reporting for counties whose residents commonly travel outside Michigan for health care. Possible Solutions: Rates are calculated only for resident children who are also born in Michigan. Establish interstate data exchange

Limitations Passive reporting Implications: Inconsistent or incomplete reporting may lead to a reduced number of cases. Over-reporting due to suspected diagnoses that are later ruled out may cause on over count of the number of cases. Both situations make comparing rates of birth defects over time or between regions difficult. Possible Solutions: Standardization of collection and quality assurance over time Perform linkages with other databases to check diagnostic accuracies

Limitations Passive reporting Implications: Case reports may contain missing data, making the data unusable. Possible Solutions: A web-based training module was implemented in January 2006 for staff who submit case reports. Develop a “report” for hospitals on what information is missing and how often it is missing

Limitations Timeliness Implications: Valuable time may be lost by not observing important trends until 2 years after they occur. Possible Solution: Train facilities to use electronic reporting instead of paper reporting, because this requires fewer steps for quality assurance, data entry, and formatting.

Limitations No data on outcomes of prenatal diagnoses of birth defects Implications: The outcomes of prenatal diagnoses of birth defects, particularly spontaneous or elective termination, may affect the rates of birth defects. Possible Solution: The Prenatal Ascertainment Project collected data on prenatally diagnosed birth defects from 8 Michigan hospitals.

Discussion Purpose of MBDR Collect statistical data on the incidence of birth defects and monitor trends Facilitate research studies on etiology of various birth defects Provide data for prevention efforts, program planning and evaluation

Michigan Birth Defects Registry (MBDR) - Vital Records and Health Data Development Section Glenn Copeland, Director Won Silva, Manager Lorrie Simmons, Quality Improvement Coordinator Genomics & Birth Defects Program - Division of Genomics, Perinatal Health and Chronic Disease Epidemiology Violanda Grigorescu Janice Bach Joan Ehrhardt, Program Coordinator Nancy Deising, Care Coordination Specialist MDCH Birth Defects Team Maternal & Child Health Epidemiology Section- Steve Korzeniewski Mary Kleyn, Epidemiologist

Thank You Any questions?

References 1. Centers for Disease Control and Prevention. Birth Defects: Frequently Asked Questions Anderson RN, Kochanek KD, Murphy SL. Report of the final mortality statistics, Hyattsville, Maryland: US Department of Health and Human Services, CDC, National Center for Health Statistics, (Monthly vital statistics report; vol 45, no. 11, suppl 2). 3. Copeland GE, Kirby RS. Using birth defects registry data to evaluate infant and childhood mortality associated with birth defects: An alternative to traditional mortality assessment using underlying cause of death statistics. Birth Defects Research Part A: Clinical and Molecular Teratology 79: (2007). 4. Centers for Disease Control and Prevention. Birth Defects %20Report%2005.pdf %20Report%2005.pdf _7.pdf 8_7.pdf 7. Berger KH, Zhu B, Copeland G. Mortality throughout early childhood for Michigan Children Born with Congenital Anomalies, Birth Defects Research Part A: Clinical and Molecular Teratology 67: (2003).